Confused - blood results good but pain worse

Wonkylegs

HI, wondered if anyone else has experienced this?

It seems that the meds combo I am currently on is now working well - 15mg MTX injections and 10mg leflunomide have brought my CRP into the 'normal' range for the first time in years, and the PV is not far from the higher end of 'normal' either.

The thing is, although the blood results get better and better, the pain is getting worse and worse and I am wondering is it me or is this normal :? :? :? :? :?

I used to be able to manage with 3 doses of co-codamol during the day, with only one of these being the stronger dose. Now I find that I am taking the stronger ones most of the time, and most days I take all 4 doses that I can take.

today I have found myself counting the minutes until I can take some more.

Is this 'normal'???? :? :? :? :? :? :? :?

Wonkylegs

collywobble wrote:

Hi Wonky

First of all, that's brilliant news about your bloods - that's a good sign the RA is being controlled isn't it?

The pain getting worse - not sure, but could it be that your physical symptoms and pain take a while to catch up with the blood results? Does that make sense. Or.... maybe the effects of the painkillers are wearing off faster? Don't our bodies develop a tolerance to painkillers? Plus, this weather MUST make a difference too. I hope you start noticing a real improvement soon, not just in the blood results.

Luv, Lynn

thanks Lynn,

you are right of course, they are finally getting on top of the RA without the nasty side effects but I am finding it hard to smile right now feeling like this.

I know the snow is part of it, and the cold as well (although i'm managing fairly well to keep warm this year ) but am fed up adn I suppose just a bit worried that maybe I have got too used to taking the co-codamols. :? I did ask my gp and she said it was better to take them and not be in pain ..... but I've not had a time when the tablets didn't do the trick quite like this weekend

I'll see how things go and maybe go back to see her. I do hope you are right and the joints will catch up eventually with the bloods

trisher

Hi Wonky

I have noticed that during this cold weather, I have pains all over me.

Last night, it was really cold, and I had pains where I do not have any trouble with. MY GP came out to see me and she said it could be and to leave the heating on during the night.

It has made my Asthma worse.

I hope you feel a bit better soon, Wonky

love Trish xxx

woodbon

Hello Wonky, I'm just writing to say how sorry I am for the pain you have. I hope that you can get it sorted out and the spring is just round the corner, well, a few corners, but they will go quickly, I hope. Take good can of yourself, we need you! Love Suexxxx

breane

Hi,I am in a similar position as you.I saw the rheumy consultant last week and he said my bloods were good and my Das score was very good,in fact he lowered my Hydroxy to just one a day.However,my arm/shoulder pain is getting no better and I'm awake most nights due to the pain. Every morning my hands are stiff and my middle finger won't bend,it takes several hours before it will bend back to normal.I did mention the shoulder pain to the consultant and he said to ask my Gp for a steroid injection.I've made an appointment to see him on Wed. as the lack of sleep is taking it's toll.I've tried co codamol and tramadol but neither helps with the pain.Sorry I havn't got any useful advice for you but I would ask your Gp why if your bloods are OK why are you still is so much pain. :?: I will be asking that question too. Breane.

Wonkylegs

collywobble wrote:

Hi Wonky

Do you take anti-inflamms aswell? Are you allowed to with your other meds? Just thinking, maybe taking those too might help reduce the co-codamal, so when you do need the co-codamol they'd work better?

I'm back on the MTX now, after a couple of weeks off, and even though when I saw the rheumy last week, he did a DAS score (still not sure what that is) - which he said was low, and my bloods are great, this last week I've felt a bit grim!!! Doesn't seem to make sense, does it?

Take care
luv, Lynn xx

HI LYnn,

thanks for your reply - I do take ibuprofen already. until recent months that kept things at bay and the co-codamol was only when I needed it. SInce I had that month with no MTX and the other problems with the higher doses of MTX & Leflunomide together, I ahve been taking more and more co-codamol which has been worrying me - but GP says better to take it than be inpain, so I am trying not to worry too much.

Have managed with just the lower dose ones at lunchtime today, as I am taking things easy, but we'll see how the day progresses.

I have an OT appointment in Feb, and I see the Rheumy nurse on 21st Jan, so I am taking a list of questions with me!!

I do think the weather is the root cause of us feeling so rubbish - I wish it would go away!

hope you feel better soon too.
hugs ((())))
WOnky

Wonkylegs

breane wrote:

Hi,I am in a similar position as you.I saw the rheumy consultant last week and he said my bloods were good and my Das score was very good,in fact he lowered my Hydroxy to just one a day.However,my arm/shoulder pain is getting no better and I'm awake most nights due to the pain. Every morning my hands are stiff and my middle finger won't bend,it takes several hours before it will bend back to normal.I did mention the shoulder pain to the consultant and he said to ask my Gp for a steroid injection.I've made an appointment to see him on Wed. as the lack of sleep is taking it's toll.I've tried co codamol and tramadol but neither helps with the pain.Sorry I havn't got any useful advice for you but I would ask your Gp why if your bloods are OK why are you still is so much pain. :?: I will be asking that question too. Breane.

Hi Breane, sorry to hear you are having similar problems. It is no fun when we can't sleep is it?

My shoulders were a bit better last night having soaked some flannels in hot water with lavender essential oil in, then laying them on my shoulders for a bit. The physio recommended that.

I must admit I have never had a joint injection of steroids, just the general injection of steroids - and I did n't get on with them very well. DO you get the same side effedts of steroids when it is joint specific I wonder? Maybe if you get one you could let me know?

hugs ((((()))))

wonky

Wonkylegs

HI Sue & Trisher - thanks for your replies. I don't feel so alone right now!

Maybe we could all gang up together against this weather and blow it away? ready girls ....... one ...... two ...... threee ..........BLOW!



you are right Sue - spring will soon be here

Wonkylegs

collywobble wrote:

Hi Wonky

The flannels with lavender oil sounds good - might try that tonight!!!

I run a bowl of hot water as hot as I can, then add 5 drops lavender essential oil ** in. I add the flannels and leave them to soak for 5 mins to get the lavender into them, then ring them out so that they are not dripping but not totally dry, and lay them onto my shoulders. I re-soak them when they get cool, and it does seem to help.

**my physio said that most people are ok with lavender essential oil, as they use it on pregnant ladies and even babies, but it might be best to check first if it is ok for you - some essential oils can be bad in combo with some meds.

dorcas

Hi!

I am in a similar position too....increasing pain and further joint damage but ok bloods. ..makes no sense!

Saw my rheummy consultant in December and was given IM steroid injection but only worked for a very short time. He said that in his opinion the deterioration/ pain can be related to high levels of stress and that that stress is known to have a bad effect on the autoimmune system and therefore arther.?!

I have had single joints injected and it is different in effect from the IM injections...much more localised and for me no side effects.

Are you getting the right pain relief though? co codamol isn't the strongest or most effective?

hope things improve for you soon. sleep is so important too. Iris x

Wonkylegs

dorcas wrote:

Hi!


Saw my rheummy consultant in December and was given IM steroid injection but only worked for a very short time. He said that in his opinion the deterioration/ pain can be related to high levels of stress and that that stress is known to have a bad effect on the autoimmune system and therefore arther.?!

Are you getting the right pain relief though? co codamol isn't the strongest or most effective?

x

HI Iris and thanks for your reply.

Interesting what your cpnsultant said about stress - I do know that since the stress of working was removed for me my arthritis has been more manageable. And for me this year Christmas was indeed a traumatic and stressful time .... so that sort of makes sense and my BP is up at the mo too, so another sign that I need to try to get on top of the stress. Not easy when it is others who are the cause :? :? :? :? am working on it though!

I'm seeing my rheumy nurse soonso will ask about painkillers and what is best - I haven't needed so many for such a long time that co-codamol was ok.

thanks for the suggestions .... given me more to think about

hugs (((((((((()))))))))))
WOnky

barbara12

Hi Wonky,
Just wanted to say how sorry I am you are in such pain, sorry I can't help, hope you are soon feeling better.
Barbara x

jordan7j

Hi wonky, I feel the same, not sure my level.s are really ok, but painm is definitely worse. I am on 15mg mtx and 100mg tramadol x 4. Neither does a thing. At night the shoulder and neck pain are awful, I do take amtitriptyline prescribed by the GP but that seems to be working less and less. The steroid jabs dont work either. As far as working goes, I suppose they could say its stressful, I have been told to cut back, but its a bit hard, as the parents rely on me so they can work. Even so, that wouldnt stop the mtx from working would it?
I saw my GP and shes trying to get me an earlier appt, maybe you could try this too? Its really hard when you dont get a proper nights sleep. Good luck, Jay

ichabod6

Hello Wonky,

Where is your pain?

skezier

Hi Wonky,

Been thinking about this all day and still don't kow the answer but I do know in my case the more swollen bits get the less they hurt....... I finds my wrist especially hurt less when they are swollen than when they are not..... I also give high end of normal inflamation markers yet I seem riddled with it..... I wish so much I could help you but tons of slurps and ((( )))'s and a bowl of over peppered turnip soup Luv Cris xx

jackie1955

Hi Wonky,

I seem to be opposite to you, in that I was feeling pretty good when I saw my rheumy xmas week..... then was really disappointed to find my blood results weren't improving enough on the MTX alone, so now i have started Sulphsalazine and Hydroxy too

Regarding your co-codamel, I'm wondering if your body has just got accustomed to the dosage? Maybe you could have something stronger just to help you at the moment, then go back to the co-codamel after a break from them?

Take care, Jackie x

annie_mial

Hi Wonky - I've been thinking about your thread all day, too. I'm always interested in anything to do with blood test results/how you feel, 'cos in all the 10 years or so I've been considered as having 'arther' I've NEVER had raised inflammation markers.

I quite clearly now have something else going on apart from the original condition, but to date still have no raised markers - however, over the last three months the pain has got so much worse that they've added in Tramadol and Oramorph on top of the co-codamols. I know they have classed me as sero-neg arthritis, but does anyone know which other bloodwork can be done which gives any indication of inflammation apart from the usual ones?

Annie

skezier

Hi Annie,

My Rumo did some I think it was the ccp one? He said the hospital tests are different if they order another kind and gp's haven't got access to it. I don't know if that helps? Cris x

jackie1955

Hi, Think its called an Anti CCP test, there is some mention of it on old postings on here.

annie_mial

Thanks, Cris - I'll look into that and add it to my list of questions for my appointment later this month.

Annie

Wonkylegs

ichabod6 wrote:

Hello Wonky,

Where is your pain?

hmm ..... you did ask so here goes .......:roll: :roll: :roll:

feet,
knees,
hips,
lower back,
neck,
shoulders,
right elbow (think that may be something else :? :? )
wrists,
hands,

oh and my brain doesn't hurt but isn't working

Wonkylegs

HI Jackie, Annie, Cris & Lynn (did I miss anyone? hope not :oops: sorry if I did miss you out)

thanks for your replies.

I had a think about what had been suggested yesterday, and I also read the AC pain booklet again, which suggested that it is possible to feel more pain just because we are concentrating on it so much.

So .... today I have made a conscious effort to not think about the pain ..... not easy :roll: but I did some jigsaw, did some reading, and then went out to my CBT this afternoon. (That certainly kept my mind of the pain )

tonight I FORGOT to take the 7pm dose of co-codamol, and didn't notice that I was in pain until 9.20pm :shock: :shock: :shock: so there certainly seems to have been something of a breakthrough there

Hoping to take the lower dose tomorrow and see how I go .....

and still going to raise it with my rheumy nurse next week ....

I'll let you know .... & thanks for your replies they mean a lot.

chris7

Wonky

Sorry you are still struggling so much. Do hope you can get some pain relief soon. I am sending hugs (((((((())))))))) and really hope you get some rest tonight. Hang in there.
love
Chris

skezier

Hi Wonky,

I was interested in what you said there about thinking too much about the pain and think I have that sometimes as well. When I have the drip and am bored and just sat there I hurt far more, go more lame and feel more yuck than when this lot are working me, so this time round I will make an effort to either drift or think about sheeps and fields and sunsets and maybe it will help I never saw that but it would make sense eh?

Hope you soon loose your compacted snow....... I got some here and its truly lethal. I shall ask him come and help Little legs to bark at yours louder you know he will He promises to bring a really good thaw as well Slurps and ((( ))) Cris x

breane

Hi again,Since being told last week by the rheumy consultant that my blood tests were good and Das score very good,he reduced my Hydroxy to just one a day.However arm and shoulder pain still bad so saw my Gp today and he's put me back on Naprosyn and Omeprazole.He wants me to see if they help with the pain but if it hasn't helped in the next two weeks then he will give me a steroid injection.I just can't understand why if the blood tests are good why should the pain be worse :?: I wish he had given me the injection today so that I can get a decent nights sleep.The past 4-6 weeks I've only had 10-20 min sleep at any one time and it's really taking it's toll.I've moved into the spare room so O/H can get a good nights sleep as he has to leave for work at 6-15am and my tossing and turning all night has started to affect him.It seems good blood tests results don't mean you are improving.All very confusing. :? Breane.

lizzie7ne

Hi Wonky

I am in a similar position. I am on MTX and Leflunomide and its got my inflamatory markers down to almost normal. I was doing good
until early December, when the joint pain and the fatigue got really terrible. My Rheumy nurse said yes you can have good blood test results but still feel awful, so I got a steroid injection and it worked great, but unfortunately just over a month later i am back to square one and yes my BP is raised too.

Do you take an anti inflamatory as well as the cocodomol. I can usually get buy on cocodomol twice or three times a day but when things are like they are now I need to add ibuprofen or diclofenic (as well as my stomach protectors). - it may be worth checking with your doctor before you take them as ibuprofen can raise the BP, I have to see my BP next week about changing my Blood Pressure tablets due to the fact its been raised a while now.

Yes I heard too about the stress factor - I think either my physio or OT told me that it can trigger a flare, also an infection sometimes can too.

Hope you are feeling better soon


lizzie